Thank you all for the comforting words, cyber hugs, prayers and positive thoughts after my last post. I've been with hubby at the hospital most of the week. I read four books and crocheted five wash/dish cloths while I was there. I also watched the nurses and aides, questioned a few things and made sure hubby received good care. ( I really feel sorry for folks who don't have a patient advocate). Hubby is home now and although he is still very ill we do have some good news.
Took him to ER on Thurs, Aug 31. and he was admitted.
He was discharged on the evening of Sep. 6 for the scheduled PET scan on Sep 7.
They put in feeding tube because he had been unable to eat and drink (dehydrated and weak and weight loss, dysphagia, orthostasis) and put him on oxygen and breathing treatments 3 times per day because he could not breathe and oxygen levels were below 90 and an antibiotic for bronchitis.
They put in feeding tube because he had been unable to eat and drink (dehydrated and weak and weight loss, dysphagia, orthostasis) and put him on oxygen and breathing treatments 3 times per day because he could not breathe and oxygen levels were below 90 and an antibiotic for bronchitis.
Before I took him to ER:
An Aug 30. Swallow Test revealed he has been aspirating more than he is able to swallow. PEG tube recommended.
Aug 24 CT scan revealed bronchiectasis and mass on lung to be followed up by PET scan scheduled for Sep 7 and kidney lesion to be followed up with renal ultrasound.
Swallow problems are a side effect of oropharyngeal cancer and radiation 18 years ago. Breathing problems new and probably from lung mass hopefully not lung cancer but if it is now he has feeding tube and some nutrition. He has been losing weight and unable to eat much of anything for two months.
After he had the swallow test and I saw test and talked to speech pathologist she said she was recommending to doc that he get PEG tube right away. Then I got run around from doc and surgeon office because 3 day weekend coming up so with no chance of getting the poor guy some nutrition I chose to take him to ER. That was the right choice. He didn't even have a long wait time (10 minutes). They took him in right away, thank goodness.
He was discharged on the evening of August 6 so he could get to a PET scan (outpatient) previously scheduled for the morning of September 7. The PET scan was to follow up on the lung mass found on the CT scan. Dr. called late yesterday to tell us the good news that it is not lung cancer but probably damage from chronic aspiration.
He will probably live the rest of his life with the feeding tube for nutrition but he's all right with that. Dr will discuss more about the bronchiectasis and jaw bone necrosis and further esophageal dilations (already had four in last year) and chronic kidney disease stage 3 and BPH next week.
I am thankful he can breathe, get nutrition and does not have to worry about battling lung cancer. I guess he might be stuck with me for awhile!
Again, thank you all for the comforting words, cyber hugs, prayers and positive thoughts after my last post. I sure "know" a lot of truly awesome caring people! And you've helped me move forward. Thank you. I'll pay it forward.
Wishing you all a fabulous day!
33 comments:
Cathy:
Just wanted you to know that we were worried and were thinking of you at the Sunshine group when you hadn't posted on your blog for a bit. Best wishes that your husband continues to gain strength and that you stay healthy. Sending our cyber hugs to your family!
Kathy T. in PA
I agree with Kathy! Sunshine has been worried about you. Thanks for the update. You’ve been very busy! I’m glad the news is better than what it could have been. I hope your husband continues to improve. Hugs and best wishes!
I just read this post and your last one together. I am glad that you have hobbies, too! I know you will be okay and it sounds like your dear husband will be okay, or at least better, too. Good call on going to emergency. For Pete’s sake. This will be your new normal, hopefully better than your old normal. I hope that your son recovers quickly. I wish I lived near you so I could “help” eat your produce. Fortunately for me, you share your amazing creativity with me through your blog. Sending big hugs from California.
Just read this post--good that he is home and that he got some much needed care.
Sending prayers for both of you--hugs, Julierose
Good news re PET scan. Nutrition and breathing are not small matters - glad the tube was prescribed and is now in place. Being an advocate is exhausting so I hope you can catch a break here and there to nourish yourself. Take care!
Wow! You certainly have a lot on your plate. I hope your husband gets the nutrition he needs. And you make sure to take care of yourself. Did you get that hole fixed in the basement? Hugs and prayers to you and all your family.
Dear Cathy, I am very glad you are finally getting answers and help! You are so right, everyone needs an advocate when dealing with healthcare. Your husband is lucky to have you, and I'm sure he knows it! Good luck with everything in the days ahead.
your husband and you have been through so much - this must be so very stressful for you sitting in hospital rooms and waiting rooms are so tiring. I'm glad it is not lung cancer and hope you can deal with all that will be going on - hope you have some help now and then so you can run errands when needed.
Sending you many cyber !
Oops…this is Pat in Mi (www.bellcreekquilts.blogspot.com)
What a week you've had, Cathy! I'm glad there are answers and ways to deal with what has been happening to your husband. So glad to hear it's not lung cancer. And I'm sure those books and dish cloths made all the difference!
I'm so glad you don't have the further worry of lung cancer. Isn't it amazing what we consider to be good news "Ok to live with a feeding tube for the rest of his life"......aren't we so thankful when our loved ones can cope and we can have them with us for longer. My prayers are with you for a good outcome for your joint future. Hugs and love from Elaine in UK
Thank you for giving us an update. You and your family remain in my thoughts and prayers. Thanks for sharing.
Sending hugs CAthy. You are such a strong woman!
I have been thinking of you since your last post. So glad you got some encouraging results and a plan forward. Sending hugs.
Dear Cathy
I have thought about you and hubby so much this week so pleased to see your post today. A tough week for you both but you did the right thing taking him to ER. Much love to you both and the rest of the family.
I'm so glad to see a post from you even though it's not all good news. I was so worried that something bad had happened. It's good to hear that your husband is getting the care that he needs and you are finally getting some answers. Sometimes not knowing what you are dealing with is actually worse. He's so lucky to have you.
What a blessing to be able to be there to support him. I am sure it makes all the difference for him to know that you are looking out for him. The dishcloths are a perfect way to pass the time. Keeping busy while still being able to pay attention is so important while waiting. Prayers for stability so you can go back home together and recover.
I'm glad for the good news. Still sending prayers for speedy recovery and back to a "normal" life. God bless both of you. ;^)
Thank you for updating - it must have been a terrible drain on your energy and spirits after all the earlier worries. Please take care of yourself as well as the other patients!
Ceci
Bless your family! I have been there with my dad, I understand the toll it takes on the caregiver. If your husband will allow someone to give you respite, please set it up as soon as you can. If he doesn't have home health set up from his g/p, find out if he qualifies. A visit from a registered nurse is very valuable, an extra set of eyes and a personal care manager to make sure he is getting everything that he needs. Also look into the local senior services which is usually a state office or county office, they have lists of respite caregivers who have training and are vetted, plus they have bath aids if he needs help.
As a former wound care nurse, I am so sorry for your son's issues. Bless you!
So glad you posted an update. Like all the other responders, I am so glad that y'all have some answers and that this latest is not lung cancer. We older people are a lot more resilient that we could ever have imagined we could be (or would have to be). I hope you and your husband can find comfort in the daily routine of being home. Best wishes.
Oh my goodness, what challenges you and your husband have been facing! That was such a good choice to take him to the ER where he was finally able to get help. Poor him!!! I hope things improve quickly and that you're able to rest and take care of yourself, too, or perhaps have family take care of you and him for a day or so. So often we focus on the patient to the detriment of the care giver, who may get no support. I hope that's not the case for you! Praying for blessings for you and him.
You must be so relieved that the lung mass is not cancer, but guess you have other challenges to cope with. You are certainly doing your best for hubby, running around, taking him here and there. I often wonder how patients who are I'll and who dont have friends and family manage with multiple appointments and care. You both are in my thoughts, take care, as best you can, and know that there are many cyber friends all over the world sending you love and best wishes.
Sending you hugs and also best wishes for hubby to be comfortable and receiving vital nutrition! Hopefully you will get a little well-earned rest and peace of mind! xo, Cathy
I must have missed your previous post. I had no idea you two were going through this. My heart is breaking for you guys. Oh my! All that you two were going through and then you had to figure out for yourself how to get him the best treatment quickly. I'm glad you thought to go to the ER. Good news that he doesn't have lung cancer. I will be praying for you two. Please keep us updated.
I'm glad you persisted and got your husband to the ER and glad you've gotten some answers and a treatment plan. I know many of us wish we were closer and keep provide direct support. Take care of yourself. Get rest and nutrition whenever you can grab it.
Thanks for taking the time to update us.
Pat
Cathy, so glad all is working out for you and hubby with a plan and glad you were there to advocate for him. We Sunnies missed hearing from you. Prayers and hugs sent.
What a relief! Now you can plan accordingly.
I hope the feeding tube turns out to be a good solution for your hubby for gaining weight and getting some energy back.
Phew! So glad to hear from you! (I'd been really worried) Having answers is always a relief - at least you know what has to be coped with. Hugs to you and hubby both!
So pleased that you were able to get your husband to ER and the help and treatment he needed and will need, thank goodness he's not having to deal with cancer as well. Wishing you both well, and take care.
What an ordeal! You both need rest and recovery. Yes, patient advocates are extremely important. Medical care is pretty slipshod and has poor follow up. Praying you can both get stronger and calmer.
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